In case you don’t know, I am . . . or maybe “was” is the better term, a medical care provider before all this shit happened. I am part of the “system.” Now, I am part of the system as a patient and the view is very different than what I had expected.
I had always thought that compassion was important in healthcare. If my mother was here, she would tell you that I was different from birth. I had an unusual amount of empathy, where I felt guilt and sorrow if I stepped on a bug . . . accidentally. I felt the bug’s pain and felt grief that I had ended their short life.
I never entered healthcare as a profession because of the draw of money. It was never part of the equation. My long-term plan was to work in the developing world for just enough money to buy food. That didn’t work out, but I did find a niche in the world of headache management. I tried to get out of that field several times, however, I kept running into patients who were being treated in what you might call a way without compassion. Eventually, I gave up and committed my entire career to these folks. I have had colleagues who felt that I threw away a career, when I could have been making big bucks doing something else, like Emergency Medicine.
I hope that I treated my patients with compassion. I felt about them, the same way I thought about good friends. I knew their names. Most of the time I knew and cared about what was going on their families and in their non-headache lives. I certainly knew what was going on with their medical care from visit to visit.
As a patient and as I’ve tried to navigate our complex healthcare system, I have found compassion deeply lacking. As part of the system, I am ashamed to say that. I define this show of compassion, which is missing, as not just lack of empathy but taking the time to know who I am as a person. I have found that most of the medical providers I’ve been seeing, don’t know me. They don’t remember me from visit to visit. They don’t know that I go by Mike rather than Johnny. Sometimes they don’t know my medical diagnosis or what our last plan was. I find that very disconcerting and disappointing. If I had not been a medical provider myself, who is constantly having to make sure the right labs are done and the right medicines are prescribed, I don’t know how I would have made it.
I will pause here to say this lack of compassion is not universal. When I was in the hospital at Peace Health in Bellingham, I had one nurse, Erin, out of several, who saw me as a person and not a “bed.” She knew my diagnosis, and I didn’t have to remind her with each shift change as I did the other nurses. She cared how this new (and it was brand new at that time) diagnoses was impacting my, and my family’s life. She cared about my mental state and she cared about the care I was getting. When I told her that something needed to be changed, she worked to change it. The others didn’t remember and never responded to my requests, because they were too busy, I assume. I know they weren’t just playing cards but taking care of many other patients.
I think my primary care physician knows me and cares. He is not much in the loop because I have not seen him in a while. I will see him Monday to bring him up to date. But his lack of knowledge is not due to not caring or having compassion.
This thought about the lack of compassion came to a head this week. I don’t have the time (I’m on a dialysis machine right now and my laptop’s battery is almost dead) so I will summarize. There were three things that happened, where providers and caregivers showed that they had no clue what was going on with my care, but I will mention just one of those experiences.
I was asked to fill out a mental health survey several weeks ago. A social worker, whom I’ve met with twice before, said she needed to talk to me. She was (rightly) concerned that I expressed that I was very depressed and the reason for that depression (and this was all multiple choice so I just picked the best box) was due to my “perception that my health had recently deteriorated.”
This social worker apparently never looked at my chart. She didn’t know me from Adam. She started out saying that she was confused why I felt like my health had recently deteriorated. Afterall, my health had been in a long gradual decline. She added, once I get my transplant, I should be restored to much better health.
At first, I thought she was talking about my stem cell transplant. I assumed that she knew about this major event. But it suddenly dawned on me, and with some disbelief, that she didn’t know who the hell I was. I asked her, “What transplant?” To which she answered, “Your kidney transplant.”
I explained to her that I was not the typical dialysis patient who had suffered from diabetes for decades and had a gradual decline. But, I had cancer, which had suddenly intruded into my life. The cancer makes me ineligible for a kidney transplant. She seemed quite confused. “Cancer? You have cancer?”
So, rather that admitting that she either was working on just assumptions and never looked in my chart or didn’t remember our two previous conversations about my condition, which were just a few weeks ago, or she had looked in the wrong chart, she just looked confused and left.
With that encounter and the two other similar encounters I had that day, I felt like I was alone, a drifting ghost ship in this vast sea of meaningless healthcare. Where things were now centered on the system getting paid and not the person. I’m sure the social worker’s visit had something to do with getting paid by insurance. When the hospitalist (the doctor who takes care of you while you are in the hospital) listened to my lungs through my blanket and heavy shirts, I knew that he didn’t give a damn about my shortness of breath, but was just going through the motions of clicking off boxes and getting paid. It took my nephrologist later that night, who really listened to my chest, to find that I had fluid in my lungs. She had some compassion.
Now, I don’t want to demonize the healthcare system as being uncaring and “money hungry.” I was a medical practice owner once and was quickly confronted with how difficult it was to get paid by insurance companies. I soon became obsessed with payments too, but not to get rich, but to keep the clinic open. As matter of fact, I took no salary for the last six months of the clinic’s existence. It wasn’t that we didn’t have customers. We were overwhelmed with demand. But the rules about getting payment is like entering a house or mirrors designed by Stephen King, the horror-writer author. I hope that even in that dire situation, as we did have to close the clinic to save my mental health . . . and to avoid bankruptcy, that I never stopped being compassionate. That I never stopped seeing patients as human beings and that I never stopped lying awake at night worrying about them when they were not doing well, rather than laying away worrying about financial failure.
Our system is screwed up. I wish the non-medical person could see how messed up the system really is. It isn’t because medical providers and caregivers are bad, uncaring people. It is because now everything is driven by getting payments and if those payments don’t come in, the entire system collapses.
I want to plug a book now, and no it is not one of mine. It is a book, Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference, which just came out that shows, scientifically, showing compassion really does make the patients get better sooner and reduces costs.
Yes, the survey that I took did capture the fact that I’m depressed. It is hard, and I know that I’m not the only one, to go from a great state of health and a future, to overnight, living in a medial nightmare. Yes, I do know that there are people who are worse off than me. And yes, I pray. I pray constantly. I pray with so much sobbing that the words can’t form and that I trust that God can hear slurred words. However, I still have constant symptoms of pain and neurological complications of renal failure and it appears that no one can help me. It is hard to get some of my providers to remember that I am presently suffering with these terrible problems. My future also looks grim. My greatest hope of just living a few more years is going through this horrible process of autologous stem cell transplant. It has no promise of enhancing my low-quality of life but just keeping me alive longer. It is no coincident that during my late-night insomnia episodes, from the high does of steroids that I must take, I do searches for the best ways to end my life.
Don’t get me wrong. I do see the rainbows, the sunsets, the marvelous world in which we live, but that feeling of euphoria, only makes leaving this world more difficult. That pleasure, along with the pleasure that my family gives me, is what is keeping me alive.
I am deeply grateful that I have a wife, kids, and friends who do know me. They know my name. They know my disease state and they care deeply. It is for them I march forward in this fight to survive. I have crampons on both feet now. I see the summit through the clouds, yet the route is still formidable. Maybe I will be surprised that my relationship with the healthcare system will improve as I enter the three-month long stem cell transplant system. Maybe, on the other side, some of my symptoms will improve, although stem cell transplant is not designed to improve them. But I’m praying for a miracle.
I am writing this today because I had just listened to a review of Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference on CNN. It was on my mind during my drive to dialysis. Then I was confronted with forms to fill out that indicate that no one here knows me, my diagnosis or plan. I am just a chair, that must be billed for and that payment must be collected. That’s the primary goal. Yes, many of the people who work directly with me here are kind and nice. I’m getting to know about their lives. But, they have no clue how I ended up here.
I am sorry that I have more typos than normal. I have typed as fast as I could before my laptop went dead, through a dressing change, and with tubes of my blood racing across one arm and a blood pressure cuff on the other. I’m also sorry that my writing was much more raw than usual. It is sunny outside and maybe I will feel better once I’m home. Mike